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mom4cem

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Everything posted by mom4cem

  1. Hi and welcome. Sorry to hear how you are feeling. I too have suffered and do still suffer from pac/pvc's. Yes they can be very frightening especially when they occur so frequently and forecully, takes your breath away. I also would not rule out dysautonomia, any form, until everything else is eliminated. Everyone has some similiar symptoms to others and then some that they seem to have that no one else has. How many people really fit the "perfect" diagnosis? Not many. So many of us are all over the map, from one extreme to another. Getting an endocrine workup for thyroid etc, adrenals like taking the 24 hr urine to check for pheochromocytoma, complete electrolyte panel,(mag or potassium being low can cause them too) and all the rest that everyone else stated can help to narrow down the cause. In a structurally normal heart pvc's and pac's are considered benign, pesky, annoying and sometimes downright painful, but benign. After 15 years of having them, I'm still not used to them. When they occur, they still make me jump, and more than one in a row,,puts me over the edge I also sometimes get the fullness in my neck and head, even feels like I am choking,,(I can't wear a hooded sweatshirt or turtlenecks for that reasons). Try reading through the medhelp.org forum on pvc's,, you will really see how common it is, and how the dr's 99.9% of the time reply that they are benign. Give the tenormin some time to work. Try some of the self help measures on here, you may notice a difference too.
  2. I don't have answer for you but I do experience something similiar. I close my eyes and it feels like my eyes are moving back and forth and sometimes I see flashes of what I don't know. I also don't tolerate lights well in general. If my eyes are closed in a brightly lit room, my eyes hurt as if they were open and looking at a bright light. I splurged the other day and went to have eyebrows waxed and lying there for those few minutes the lights were killing my eyes while they were closed. Feels like I need to wear sunglassess while I'm sleeping Sorry I have no answers though
  3. Jan, words can't express my deepest sympathy to you and your family. You both have been very inspirational, just reading of your support for one another was very uplifting. Thoughts and prayers..
  4. I've been on meds for so long I can barely remember. About 110 standing, but that goes up during an episode. Sitting without meds was in the 80's-90's. With meds about 90-100 standing and 70's sitting
  5. I missed the whole boat here for wishing you good luck, but glad to see you are recovering. Speedy recovery
  6. I'm in the same boat cardiactec.
  7. Hi Linda, I was tested for vit d and it was low, about 22.(I've been seeing a dr. who is complementary/preventive medicine) I took supplements 2 vit d a day and fish oil(yuck). The next time I went and got it checked which was probably about 2 months later it was up to 64. Believe it or not, I went to an endo early this year and she never even thought of checking any levels outside of routine thyroid levels and she knew that I was seeing her trying to find out what possibly could be causing my episodes of tachy etc, and all she thought to check was thyroid. He did tell me that vit d. and the sun. Fish oil with vit d. in the winter and in the summer just take fish oil. He gave me a paper about Vit D., it says it regulates calcium and phosphorus absorption/reabsorption. Vit D linked to depression and SAD. Vit D is important in neurological autoimmune processes. Vit D upregulates apoptotic mechanisms in pro-inflammatory celss, allowing inflammatory cells to arrest appropriatedly and preventing on-going inflammation that damages tissue. My dr. also checked me for magnesium and found that I am wasting magnesium. My levels are low at 3.2 and even after orally supplementing mag. as well as weekly IV of magnesium, my levels are not budging and he has no idea why. Was magnesium tested on you? Anyway, try not to worry, and see what the levels show the next time he tests you for it. Sounds like a good endo who did some long needed tests on you.
  8. Perfectly normal to mourn for what you feel you are missing. Your husband sounds like a gem. Remember we are all here.
  9. Hi, I would also be wary on "cure". But on the other hand, different things can help different people. I've seen a doctor of osteopath and some of the changes he has had me do (diet and some supplements) have helped some. I have more decent/good days then bad. It is a lifelong committment though when diet comes in to play, you know that well don't you!). He should be more than willing to discuss things more in detail with you, rather than just tell you that you need the supplements and goodbye. Possibly starting one thing, a little at a time to see how it goes then work up. I can't take too much of any one thing from food to supplement without running the risk of having some type of reaction. I started small doses of things I tried and took it from there. Also regarding $$$, he should understand that and really look at what you could wait to take and what is really the #1 thing he would suggest you take first and the rest can wait. Otherwise, I would walk away if he is not open and willing to listen. There might be an equally good dr. out there who who thinks alternatively and complementary. A balance of both.
  10. Hi, I do share the turning the head and eye movements to fast I get dizzy, off balance. I get this at times out of nowhere. Just get hit with dizziness. If this happens in the evening then I have to sleep up with pillows propped underneath me and can't move my head from side to side for usually about 9-10 hrs then it slowly gets better. If I get it during the day, it is really tough because of work and driving. I also suffer from palpitations, come and go. We may not lead parellel lives but do share some symptoms. Good that you have a Dr. who is listening and working with you. Welcome to the board.
  11. I remember when I was pregnant and had to take a calcium channel blocker for possible pre-term labor. My OB distinctly said to make sure it was brand, not generic. She says many people have different experiences with brand vs generic and for some it does not make a difference. She for one in this instance insisted brand made a difference so who knows, it may be for you also.
  12. Hi, I'm hoping you came back from the visit with some information on what is going on. Sorry that you are still having trouble with eating. What did they say about that? (()))
  13. So sorry to hear that. Hugs to you. There are good ones out there so I hope this does not sour you on any future relationships though I know that will be a tough one. You will be stronger after this with a sharper pair of eyes to see through some people.
  14. For my two hour, every day part-time job in the school, I had to give up one hour. I'm an aide during lunch which requires standing, but that usually is o.k. for me but after two hours and walking back and forth and yelling I come home with the adrenaline pumping then I usually am doomed for an episode. I feel so bad that I can't even keep doing a lousy two hours and I am not nearly as bad physically as many others are. I have one straight hour with the option of working the second hour, floating, or I can go home if I feel ill. I just hate having to give up my second class but I guess the option of working if I want is good. Plus the thought of the outside cold air and being outside in any temp over 37 degrees is not thrilling me this year. Thanks for listening
  15. I'm so sorry to read of this. My heart goes out to you.
  16. Glad to hear you had a good trip. As no one wants to be ill, it sure can be relief when one is ill to finally have a name for it and have someone who understands to help us understand. Maybe someday I will get to see him. I'm laying low in the background since I have been for the most part functional. Really wish there were others training under him and they would then spread out over the country so everyone would have access to this great knowledge he has! Hope you are feeling well soon.
  17. Wish I could give you some help here but I don't really know what to suggest. I'm sure once they have made their minds up on what tests they will do and not do depending upon results then I'm sure they are stuck on that. Outside of pushing for an emg, which many Dr's will get testy when we request things be done, probably the only way then is to go outside and see a neuro on your own. Hope you are feeling a bit better.
  18. Hi Cardiactec, I work part-time in the school during lunch. For 2 hours I stand and walk around. I usually feel miserable after. I'm not running, just standing and walking around a bit. It takes a while for my heartrate to go back down once I sit, or I feel so hyper by the time I get to my car and leave that a full blown tachy episode happens. Does not matter how much I drink, if I take a beta blocker before, if it is going to happen, it happens. Hang in there. As for men/guys, that's right , if they are worth anything, they will stick with you through thick and thin. I was o.k. when I met my hubby but a year into being together I started with palpitations, found out I had mvp. Some gyno problems, dealt with that, and for the past two years now,(we have been married 14 years) with tachy, chest heaviness, and all the other symptoms, and he is still here. (and we have three kids). There are good ones out there
  19. Do the same here. When some asks I usuall just say "okay today". I'm afraid I will jinx myself
  20. I've been tested twice since the first time one of the tests came out just a little above normal. The 24hr urine was negative. There is a plasma free blood test they take to check the metaneprhine levels. Supposedly they are the most sensitve and can detect pheo even when one is not in an episode. But, just getting stuck by the needle can increase the circulating metanephrines so things can be a little high but normal. That is what I was told. My second plasma free test came back negative. Though my endo and cardio both said nothing about the first test being a little above normal, I insisted a few monthls later in getting retested.
  21. Welcome, hope you can find a dr. who understands this syndrome.
  22. I'm having trouble staying asleep. I can fall asleep o.k. but wake up several times, almost jolted awake. It's like I am getting adrenaline surges in my brain and my whole sleep/awake cycle is completely off. A wave of surge hits me when I try to go back to sleep,,almost like it is telling me to stay awake. Even my heartrate goes up, just as if your body is getting ready to get up in the morning. May be a cortisol thing perhaps? I have klonopin, guess I will up that but I don't really want to use any rx sleep aids. Any other suggestions?
  23. Thanks ladies. Just feeling funky these past few days. I only work 2hours a day but those two hours do me in. I've been having surges these past few days and had another while at work. My rate started to go up. Only up to about 115 but still felt awful, chest tightness, feeling every beat. This warm weather does me in also. I hate worrying if it will keep happening all day, every day. Thanks for letting me vent and have my pity party.....
  24. Hi, I hope you can get in sooner. When I was having the one-sided migraines I noticed a definite connection with the weather. When the barometric pressure was changing they would start. Hope you can get some relief until your appointment.
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